Declarations on euthanasia and assisted dying

ABSTRACT Declarations on end-of-life issues are advocacy interventions that seek to influence policy, raise awareness and call others to action. Despite increasing prominence, they have attracted little attention from researchers. This study tracks the emergence, content, and purpose of declarations concerned with assisted dying and euthanasia, in the global context. The authors identified 62 assisted dying/euthanasia declarations covering 1974–2016 and analyzed them for originating organization, geographic scope, format, and stated viewpoint on assisted dying/euthanasia. The declarations emerged from diverse organizational settings and became more frequent over time. Most opposed assisted dying/euthanasia.

Euthanasia and certain forms of assisted dying are currently legal or decriminalized in just a few countries. The Netherlands (2001), Belgium (2002), and Luxembourg (2009) have legalized euthanasia (Cohen, Van Landeghem, Carpentier, & Deliens, 2014), and Canada (2016) has introduced a federal law allowing medical aid in dying (Chochinov & Frazee, 2016;Upshur, 2016). In these four countries, euthanasia/ assisted dying is legal provided those involved follow certain procedures involving an informed and competent request. By long standing arrangement, Switzerland does not prosecute those who assist a suicide death, provided they do not benefit from the outcome. A similar, more recent arrangement prevails in Colombia.
n the United States, some individual states have legalized physician assisted suicide (PAS) (Varadarajan, Freeman, & Parmar, 2016). This process involves a doctor prescribing lethal drugs to a person who, following defined procedures, wishes to die by taking the drugs, and then does so. Oregon legalized PAS in 1997 and subsequently so did Washington State, Montana, Vermont and California (Gostin & Roberts, 2016).
The case for assisted dying and/or euthanasia is being debated in many settings, especially those where no specific legislation yet exists and has led to a range of advocacy interventions. One way to influence policy is by generating formal statements on single issues. When associations, organizations and groups concerned about end-of-life issues promulgate their views on a specified matter, they can draw it to public attention and call for change.
We refer to advocacy interventions of this type as declarations. Although they may take different names (statement, resolution, manifesto, charter, commitment, or proclamation) such declarations group around a common purpose. They capture the goals of interest groups, make statements of intent, point to a more desirable state of affairs, and encourage greater awareness to achieve a stated goal. These declarations have no legal mandate but do have potential for influencing laws, policies, systems and processes on end-of-life issues. They have become a part of the landscape of end-of-life care, and the debates that swirl around it.
At the same time, they are poorly documented and largely ignored by researchers. Yet they are important markers in the evolution of end-of-life discourse. They give perspective on the changing discussion around specific issues and have some importance within the culture of many end-of-life care organizations. They merit research scrutiny, in particular, when declarations on the same topic take up opposing or differing perspectives.
Building on an earlier study of declarations in support of palliative care development (Inbadas, Zaman, Whitelaw, & Clark, 2016), we focus here on such statements as they relate to euthanasia and assisted dying. Our aims were to (a) track over time the emergence of euthanasia/assisted dying declarations, in the global context, (b) describe their form, structure and characteristics, and (c) document their stated purposes. We set out to build a comprehensive collection of declarations that relate to euthanasia/assisted dying and are available in the public domain.

Method
First, during the period August to December 2016 we identified euthanasia/assisted dying declarations, using English language searches on the Google search-engine with the key words euthanasia, assisted dying, and assisted suicide, in combination with declaration, charter, manifesto, resolution, and statement. This process generated 57 declarations before reaching saturation.
Second, we searched websites of key euthanasia/ assisted dying organizations and palliative care associations. This process generated 16 declarations from the websites of the World Federation of Right to Die Societies, the International Association for Hospice and Palliative Care, and Dying with Dignity Canada.
We then assessed these 73 declarations for inclusion in the study. We included all declarations that comprised formal public statements and contained at least one element of advocacy (Dunning & Lloyd, 1995). Using this formulation, we excluded 11 declarations. These comprised eight statements from individual hospices explaining their position on euthanasia/assisted dying; one response of a political party to an individual who had asked for the party's position on the Supreme Court decision regarding assisted dying; and two detailing implications for pharmacists and nurses (respectively) if euthanasia/assisted dying were legalized.
We then subjected the remaining 62 declarations (Table 1) to content analysis, with the following objectives, to (a) build a timeline of their publication, (b) identify the organization/association that issued them, (c) record the stated viewpoint on euthanasia/assisted dying, (d) assess the geographical scope of the declarations, (e) determine their format and structure, and (f) document their recommendations. We chose content analysis because it is applicable for the analysis of text from a variety of documents and facilitates the study of their characteristics (Duncan, 1989) and is appropriate for exploring areas of study that lack pre-existing theoretical frames (Ruiz Ruiz, 2009). Our categories were year of publication, geographical scope, formats, types of organization, and viewpoints expressed in the declarations. We also analyzed the relationship between different categories (e.g., between the timeline and viewpoint expressed, and type of organization and viewpoint expressed).

Results
We could identify the year of publication for only 51 declarations. The oldest declaration was issued at the Annual Conference of the Methodist Church of Great Britain in 1974. The next two decades saw only occasional examples. Between 1992 and 2009, 23 declarations were issued, and there were 23 more between 2011 and 2016.
The type of organizations producing these 62 declarations varied widely. Health care organizations (29) included national and international medical and nursing associations, specific fields of medicine such as palliative care or geriatric care, and societies representing particular patient groups, such as the Association for Persons with Severe Handicaps, Parkinson's UK and The Arc of the United States. Religious organizations (16) were all Christian in orientation, including Methodist, Baptist, Catholic, the Salvation Army, the Reformed Churches, and the Christian Medical and Dental Association. Others included political parties (three) and those organizations instituted to advocate for (eight) or against (four) euthanasia/assisted dying.
Seven out of the eight declarations in the group established to advocate for euthanasia/assisted dying were issued by the World Federation of Right to Die Societies. The first of these was in 1976 and the remaining six were issued between 1996 and 2006 at 2-year intervals, corresponding with the biannual conferences of the Federation.
Nearly three quarters of the declarations (45/62) were against euthanasia/assisted dying and were issued by associations of palliative care and other health care disciplines, associations of patient groups, and churches. Nine declarations advocated for the introduction of euthanasia/assisted dying, of which seven were issued by the World Federation of Right to Die Societies. Among the eight declarations that expressed a neutral position, two were from political parties calling for further discussion on the subject. Others included health care associations representing divided views of members, organizations that expressed their commitment to equal treatment of all patients irrespective of their position on euthanasia, and those that refrained from taking a position because euthanasia/assisted dying was illegal in their respective countries.
All declarations issued by religious organizations were against euthanasia/assisted dying. Among health care organizations, 24 were against and 5 were neutral. Two declarations from political parties took a neutral position and one was for euthanasia/assisted dying.
Analyzing the 51 declarations where the year of publication could be identified, we found different 576  (14), United Kingdom (12), Canada (eight), New Zealand (three), and the Netherlands (one). Many were published because of a proposed change in legislation or a judicial decision. The international declarations (19) were all issued by organizations or churches with a global presence, such as the World Medical Association, The World Federation of Right to Die Societies, The Christian Medical and Dental Associations, The Salvation Army International, and the Sacred Congregation for the Doctrine of Faith. Two declarations involved two countries only (Australia and New Zealand), and two involved a specific region within a country (Quebec, Canada and New Mexico, United States).
The 62 declarations came in several formats. Most common was a statement of convictions (38) expressing beliefs and opinions. Others made recommendations (23) to governments, policy makers, health care professionals and the wider public, expressed specific concerns (10), made a call to action (seven) for governments, health institutions or the public, made an explicit position statement (six) of the organizations' stand, described their action plan (three), and recorded their commitment to a cause or an aspect of care (two). Many declarations contained more than one of these formats.
Most declarations indicated the ethical or practical reasons for their position on euthanasia/assisted dying (Table 2) and included religious beliefs, moral standards of medical practice, and potential for the abuse of legalized assisted suicide and the right to die.
The recommendations in the declarations varied in relation to the "viewpoint" adopted: for, against or neutral. Recommendations from declarations for euthanasia or assisted dying included decriminalization of voluntary medically assisted death; legalizing medically hastened death; respecting the voluntarily expressed will of individuals as an intrinsic human right; openness to and acceptance of terminal sedation as a form of assisted dying; inclusion of assisted dying within the mandate and practice of palliative care.
The most prominent recommendation from declarations against euthanasia/assisted dying was for improvement in the provision of palliative care. This was followed by recommendations about access to and the administration of medications for adequate pain relief. They asserted that good palliative care and physical symptom control minimize the number of requests for hastened death and that governments should pay attention to lack of relevant health and social support, equality, and justice. Asserting that misconceptions about suffering at the end of life fuel the public demand for legalizing euthanasia, some declarations recommended public education about palliative care.

Discussion
Our study has demonstrated that the practice of issuing declarations on euthanasia/assisted dying has emerged as a significant phenomenon within the field of endof-life care. We have shown an increasing incidence of such declarations over time and their growing prominence as an advocacy tool. The declarations take specific (though varied) positions on the issue of legalization of euthanasia/assisted dying and aim to promote these to gain public support and/or favorable actions from governments. Despite their emerging significance, no commentary exists to our knowledge on such advocacy documents and their role in end-of-life debates and discourse. As the discussion on these issues spreads to more countries we are likely to see the appearance of further declarations of this type.
Our analysis shows a specific geographic range in the declarations identified. They all emanate from the United States, Canada, Western Europe, Australia, and New Zealand. These are countries where active measures have taken place to consider the value of legalizing euthanasia/assisted dying or where such legalization has  (Saadery, 2014;Rao & Satyanarayana, 2016), relevant organizations from these countries have not yet prioritized declarations on the issue, or such organizations may not yet exist. It seems likely however that greater prominence will be given to debates about euthanasia/ assisted dying in low-and middle-income countries and the appearance of such declarations from these settings is therefore to be expected. The diversity of viewpoints on euthanasia/assisted dying is strikingly depicted in these declarations. Declarations for euthanasia/assisted dying range from those which endorse the decriminalization of assisted dying, to those which demand it as a fundamental human right. Declarations against range from those suggesting that assisted dying may not be the right solution to the problem of suffering, to others which strongly condemn initiatives to legalize euthanasia.
Although declarations for and against use some terminologies in common, the extent of their meaning and use differs significantly. Respecting the contents of a living will is a commonly recognized issue in end-of-life care. Yet although declarations favoring euthanasia extend the value of the living will to those expressing the wish to die, those against do not support its use to facilitate medical assistance to end life.
Although all declarations express their intention to promote dignified death, those for euthanasia consider respecting autonomous decisions of the individual on the timing, place, and manner of death as aspects of dignity. Declarations against euthanasia, however, present dignity as an equal and inviolable quality inherently possessed by human beings. They present the view that intentional killing of a human being, even at their voluntary request due to intractable suffering, undermines human dignity.
Despite their wide ranging characteristics and divided perspectives, euthanasia/assisted dying declarations share some of the wider principles of advocacy. They identify with disadvantaged populations, promote their cause, and invoke responses from positions of authority and professional groups, as well as from wider communities (Gray & Jackson, 2002;Price, 2003).
We acknowledge certain limitations to our study. Although the search for declarations was conducted in a systematic way, it is possible there may be other declarations we did not find, for example declarations could have used different terminology in their titles to our keywords or declarations may have been issued in other languages than English. Therefore, while capturing the landscape of declarations to a significant degree, there may be other declarations on euthanasia/assisted dying that are not covered in this study. We consider this a small possibility however. The findings of our study are also limited by the contents of these advocacy documents. We acknowledge that these may not necessarily represent the views of all individuals that make up these organizations, though they are the declared organizational position on the issue. It is also possible that there may be other organizations concerned about the legalization of euthanasia/assisted dying that have not considered it a high enough priority to issue a declaration.
Declarations relating to euthanasia and assisted dying represent the views and demands of diverse communities of interest concerned about suffering at the end of life, often with a determination to make their voices heard and to advocate for change. Our study has catalogued the emergence of this particular form of intervention as an advocacy tool in the wider debates about end-of-life issues. We have identified the various organizations involved, the positions represented and the recommendations made. In so doing, we have opened up a space for further analytic work and more comparative analysis of declarations across a range of end-of-life issues. Further exploration of these declarations in the light of their respective contexts will help understand their significance and impact.